Hypothyroidism and fibromyalgia

[Meg75]

Has anyone else been diagnosed with hypothyroidism and fibromyalgia ?? I’m in so much pain mainly my back,legs and feet. But pain differs from day to day and is constant.Had my thyroxine upped to150mg and been put on amotriptoline 10mg but no change. At my wits end. Constantly tired and can’t sleep. Any tips would be so great full. I’ve been suffering for 9 years now and it’s getting harder to carry out everyday tasks.

[Jaydee1507 Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

Often people are labelled with fibro when they are under replaced with Levo. Low vitamin levels caused by low stomach acid which is common in hypo people also add to the symptom burden.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

How do you feel?

Do you do tests as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

[Tracyc2024]

Hi I have had fibromyalgia and CFS for twelve years and after a hospital stay at the weekend a doctor on a hunch tested my thyroid levels and has diagnosed hypothyroidism.

He thinks that the Fibro is infact just misdiagnosed and once I get the levothroxine levels sorted a lot of the symptoms will ease.

How long have you had both? Am really hoping he is right and my symptoms improve as fibro is really rubbish

[greygoose in reply to Tracyc2024]

Hypo is really rubbish, too! Doctors often 'diagnose' fibro, CFS, ME when they have no idea what is wrong with the patient - and with thyroid that is most of the time - it makes them look as if they're doing something whilst actually doing nothing, and it's a 'diagnosis' no-one can disprove. Also, as there's no cure or treatment, that's one less patient they have to deal with. Win, win, as they say. For doctors, anyway. Not for the patient!

[Sparklingsunshine in reply to Tracyc2024]

I'm sorry to rain on your parade but I've had Fibro since 2008, long before I was diagnosed as hypo. I too was hoping Fibro was undiagnosed hypo and that once I started on Levo I would make a miraculous recovery.

Alas 4 years later and after much experimentation with Levo doses, NDT and now Levo/ Lio combi I'm still much the same. So either Fibro and hypo are seperate entities or being hypo and undiagnosed has permanently damaged me, causing the Fibro.

I have Ehlers Danlos as well which is a complicating factor, but whilst I'm sure some Fibro patients are undiagnosed hypos and they may get better once on thyroid replacement, its certainly not true for everyone. Its too simplistic to assume that thyroid replacement is the panacea for all ills.

[Sparklingsunshine in reply to Sparklingsunshine]

The other issue is there doesnt seem much consensus on what Fibro is? An autoimmune condition, psychological distress, an overly sensitive central nervous system. I've seen lots of theories over the years.

There seems to be a genetic component, environmental factors, other co morbidities like joint hypermobility, hypothyroid, arthritis, plus often another chronic pain condition like migraine or IBS, being female obviously.

Despite Fibro being a disabling and relatively common condition doctors still seem pretty clueless as to causes or even concluding once and for all the definition of Fibro. So until they get off the fence we're a long way from effective treatments.

[SlowDragon Administrator]

Which brand of levothyroxine are you taking

Do you always get same brand

Get FULL thyroid and vitamin test 6-8 weeks after any change in dose or brand Levo

is your hypothyroidism autoimmune

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

What vitamin supplements are you taking

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Cornwaller]

ncbi.nlm.nih.gov/pmc/articl...

[sparkly]

The advice i would give to any lady who has been diagnosed with either fibro/cfs/me is to research about T3 and also testosterone if menopausal

[Brightness14]

I have no thyroid and only have those symptoms when my FT3 is low. Especially pains in the legs. When my FT3 is higher I have no pain whatsoever.

[dizzy864]

Years ago, I was diagnosed with fibromyalgia. I d been on thyroid meds for 15 years. I even had a blue badge! I really suffered for six years. I read an article on line that stated fibromyalgia was usually mis diagnosed vitamin D deficiency. It turned out I was very deficient. High dose vitamin D cured all my pain and mobility issues.I had considered this before but decided I couldn't be deficient as I d had winter sunshine abroad every year. It turned out my body couldn't store vitamin D as it should!

Have you had vitamin D tested? I would strongly recommend you do.

Good luck

[arTistapple]

Good advice. Let everyone know your blood test results for more help. You might need to ‘tweak’ your medication.

[jenny876]

I was diagnosed with fibro 7 years ago after years of pain, mainly neck and back and have been taking levothyroxine since last october after being diagnosed with Hashimotos- my pain is worse if anything and have bulging discs in my back and sciaitica in my legs and neck and head pain is worse than ever.

I had hoped that treating my underactive thyroid and low vitamin levels would help but not so far - the only thing Im low on now is ferritin so trying to up that. Cannot sleep and really struggle to cope. Wish I had somehting more positive to add.

[Judithdalston]

Yes fibro and hypothyroidism, but also diabetes ( originally type 2 but type3c now due to routine procedure 10 years ago that went wrong leaving me with septic shock and acute pancreatitis), and for last 4+ years Long Covid. I can suggest get your FT3 tested ( mine was barely in range despite 150 levo dose), and if necessary dose T3 ( originally I DIYed with Turkish Tiromel, now get it thru Roseway Lab prescriber) and test for folate, ferritin, vit D and B12, and supplement ( check on forum for advice re this and other supplements like selenium) as from my experience Gp will rarely do any of these tests or supplement etc. It’s very difficult to unpick which ailment might have caused which pain/ stiffness, but do remember before I upped vits/ mins, then t3, that I had days when my walking was so bad it was ‘tea- leaf’ sized ( showing my age with ‘Granny’s footsteps’ playground games), others when pain in ankles/ lower calf too bad to walk.